posted
First things first. I have nearly all of the symptoms that Dr. B and people on these forums say come with Lyme and the co-infections. The only ones that I do not have are the extremely severe ones like Bell's palsy. I am particularly sure that I have Babesia (severe headaches, sweats, air hunger, tippy feeling, etc.) and Bartonella (muscle twitches, pain in soles, etc.).
I am almost certain that I would be diagnosed with Lyme by an LLMD. Unfortunately, I have not been able to find one yet. I just posted on the forum that I was looking for one in Philadelphia, where I am for school.
My internist just sent me the results of my Western Blot. The results for the ELISA have not come in yet, but I am not putting much faith in it because everyone on this forum seems to think that it is usually negative regardless of whether one has LD. Here are the results. I believe the test was done by Quest, which I found out too late is not very good. I would very much appreciate feedback on my results.
quote:
LYME DISEASE AB (IGG) WB NEGATIVE NEGATIVE 18 KD (IGG) BAND NON-REACTIVE 23 KD (IGG) BAND NON-REACTIVE 28 KD (IGG) BAND NON-REACTIVE 30 KD (IGG) BAND NON-REACTIVE 39 KD (IGG) BAND NON-REACTIVE 41 KD (IGG) BAND REACTIVE A 45 KD (IGG) BAND NON-REACTIVE 58 KD (IGG) BAND NON-REACTIVE 66 KD (IGG) BAND REACTIVE A 93 KD (IGG) BAND NON-REACTIVE
IgG western blots which have 5 (or more) of the 10 significant bands are considered positive for specific antibody to B. burgdorferi. (Proceedings of the 2nd Conf. on Lyme Disease, Dearborn, MI, 1994.)
LYME DISEASE AB (IGM) WB NEGATIVE NEGATIVE 23 KD (IGM) BAND NON-REACTIVE 39 KD (IGM) BAND NON-REACTIVE 41 KD (IGM) BAND NON-REACTIVE
IgM western blots which have 2 (or more) of the 3 significant bands are considered positive for specific antibody to B. burgdorferi. (Proceedings of the 2nd Conf. on Lyme Disease, Dearborn, MI, 1994.)
quote:
I have read that a positive for 41 KD is meaningful if one does not have syphilis or gum disease. I am certain that I do not have syphilis because I have had only one partner who was a virgin before we met. My gums are in excellent condition; I brush and floss daily. So does the 41 KD mean anything? Thanks so much for your feedback. Reading your comments has helped me immeasurably.
-------------------- Bart and Babesia seropositive Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset Posts: 168 | From PA | Registered: Feb 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
True Quest is not the best to say the least. But 66 is considered a outer surface protein and 41 is flagella material.
If you did not challenge and are as sick as symptoms say I am not suprised.
I took a antibiotic of sorts for 3 mth.s to get mine to show. I would go with the best chance to get well and that is with a LLMD who may want to treat and retest later.
Many of us get a lot worse on treatment from killing the bugs(poisons in the system and loss of cells), and that may be a good sign you are on the right track. Prayers for a easy road.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Don't focus too much on those results. Testing is poor, and testing at Quest leaves out alot of lyme specific bands.
You are on the right track by coming here, educating yourself about Lyme and getting proper diagnosis and treatment through a LLMD.
Only a LLMD following ILADS guidelines will be able to help you recover and evaluate and treat you properly for coinfections like Babesia and Bartonella.
You can read the western blot explanation in Dr B's paper on page 7...
Remember that MANY of us have only had officially CDC negative lab results, yet we have lyme.
The bottom line is that it is a clinical diagnosis and if you want to recover and not suffer forever, find a LLMD asap.
All the best to you!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Other infectious pathogens can cause the same symptoms as lyme. Consider getting tested for HHV-6, EBV, Cpn and enteroviruses. Do a search using my member number for more info on these pathogens. www.hhv-6foundation.org www.enterovirusfoundation.org
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Band 31 is not included in the standard CDC guidelines for the Western Blot for Lyme apparently. My WB was performed by Quest, which merely followed the CDC recommendations. I should have made sure that I was getting a WB with all of the important bands, but I didn't know that there were different versions of the WB. It was hard enough just to get the doctor to order the WB in the first place. I doubt she would have ordered a WB with the correct bands.
How can I go about getting an Igenex Western Blot done? Thank you so much for you replies. I am learning so much and feel hopeful that a MD will be forced to diagnose my with Lyme when he/she is faced with all of the debilitating symptoms I have plus a positive blood test.
I am working on getting an appt with a LLMD. I live in PA where there are many good LLMDs, but it is difficult for me to get to them because I am a student in Philadelphia and I don't have a car.
-------------------- Bart and Babesia seropositive Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset Posts: 168 | From PA | Registered: Feb 2010
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posted
I believe Igenex is www.igenex.com. Testing is expensive ($500-600). You do have 2 positive bands, so I think you should spend that money on seeing a LLMD. That would pay for 2 1/2 appts. for my LLMD.
I read that you don't have a car. Can you "rent" a car from another student for the day? Or pay a student to drive you? Can a family member come get you and drive you? My LLMD is 3 1/2 hrs each way, but we manage to do it in 1 day.
Don't be shy about asking for help. In my experience, friends, family and even strangers really want to help.
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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Band 41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
Band 66: Heat shock protein. This is the second most common borrelia antibody.
-------------------- In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
This is true regardless of whether it is IgG or IgM.. But again, there is no universal agreement on the significance of these bands. Betina Wilska, M.D. from Germany is one of the world's experts on outer surface protein A (31 kDa).
At the international borreliosis conference in Vancouver, British Columbia, I asked her personally about the 30 kDa band. She told me it was the same as the 31 kDa band (osp A).
When you have the opportunity to talk to borreliosis experts, this helps in assigning significance to findings, on an imperfect test. As a medical doctor, I am stating all of this with no axe to grind, no professorship to protect, and no preset opinions. Patients, personal research, and conferences have helped me interpret the borreliosis medical literature in regard to testing.
Nobody would like to have available a bullet-proof, 100% reliable Lyme borreliosis test more than I would. But we must use what is currently available. I always welcome second opinions.
----------------------------------
From his comments sometime around 2005.
The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.
Be sure to click on the link and read all of the information. VERY important!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Thank you so much Lymetoo! Your piece about the Western Blot was extremely informative and helpful. Together with your piece and Diagnostic Hints and Treatment Guidelines by Dr. B I know with certainty that I have Lyme. I have all of the classic symptoms of Lyme plus reactive bands.
My internist told me that my test only indicated that I had had Lyme in the past and not necessarily that I have it now. Isn't that position entirely illogical? I have never been treated for Lyme. In fact, I have received no antibiotics of any sort for at least ten years. If I have ever had Lyme doesn't that mean that I still have Lyme? Obviously I need to meet with a LLMD. I am working on finding one that I can get to.
I believe that I have had Lyme for at least four years and maybe longer. I have had symptoms for four years, and I also remember seeing a bullseye rash, though it only lasted a short time, at least four years ago, probably longer. I was such an idiot to not go to the doctor about it, but I didn't think it was a big deal. Then again, no doctors will diagnose me now when I have all the symptoms and reactive bands so I don't know if anyone would have diagnosed me then. I was in TN where Lyme is very rare. Now I am in Philadelphia where it is more common yet all the doctors are avoiding the diagnosis at all costs. They don't even want to say the word "Lyme". Can you explain why that's the case?
Can you give me an idea on the treatment? I am certain that I have co-infections, definitely Bartonella and Babesia at least, judging by the symptoms. If I've had Lyme for years should I get IV antibiotics? How long might the treatment take? How much would it cost if my insurance decided not to cover it? Thank you so much for your help. I'm beginning to see the light at the end of the tunnel.
-------------------- Bart and Babesia seropositive Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset Posts: 168 | From PA | Registered: Feb 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
These 3 articles should help you understand the controversy re: Lyme:
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Thanks! I will be sure to check those out. Does anyone have input on the basics of what treatment looks like for someone with long-term Lyme (at least 4 years) plus Babesia and Bartonella? Does anyone know what the price is if not covered by insurance? Thanks! I look forward to the day when I am treated and I can help people going through the process that I am going through right now.
-------------------- Bart and Babesia seropositive Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset Posts: 168 | From PA | Registered: Feb 2010
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Ian,
Just so you know, I am from Tennessee, and no matter what the crazies say, Tennessee has a BIG problem with lyme. You very well could have gotten it from here.
As far as the cost goes, the doctor that we are going to is $500 for the first visit, and $250 after that. That's not taking into account the blood work and meds. I'm sure that someone else will come along with more information about that. I am pretty new to the scene. Christie
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
Ian - I am also new to this but my son's co-infection panel was about $660.00 and each doctor visit about $350.00 (they have checked his blood at each visit) have no idea what IV costs or how they decide if that is necessary, you will also need probiotics which run $50.00 or so a month. I think it all depends on your insurance as to what is covered, for us only prescriptions are. Best of luck to you.
Posts: 448 | From minnesota | Registered: Feb 2010
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posted
Thanks for the info kidsgotlyme and LymeXtu. I do think that I got Lyme from TN. I saw the bullseye rash at least four years ago, probably more like five or six. I remember being in my room in TN when I saw it. I was stupid for not doing anything, but I had never heard anything about a bullseye rash or what it might mean and ticks were thought to be harmless. When I was living in TN I was bitten by a number of ticks, and we had woods right in our backyard.
I thought that I was just unlucky, one of the very few that contract Lyme in TN. I bet you're right though kidsgotlyme. It simply doesn't make sense that TN wouldn't have a big problem with Lyme. There are a large number of suburbs in wooded areas with many ticks. I bet the numbers are so low simply because (1) people aren't diagnosed and (2) when they are it isn't reported.
Thanks for the info on cost. I'm concerned about it somewhat but then again, money is nothing compared to health. If you don't have your health you don't have anything. I am willing to pay what I need to, even go into debt, to treat myself properly.
-------------------- Bart and Babesia seropositive Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset Posts: 168 | From PA | Registered: Feb 2010
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posted
Well said Ian. Too bad it has to be that way though. I wonder if Lyme is the only DISEASE that would not be covered for those of us with insurance?
Posts: 448 | From minnesota | Registered: Feb 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
The Guidelines for long term Lyme treatment are here:
The cost of Lyme treatment without insurance varies alot depending on how much LLMD appts cost, how often you are seen by LLMD, how much labwork you need, how many supplements you take, which meds you take (Mepron for Babesia being very expensive....but there are programs to help low income people), and other things.
It helps to ask your LLMD to keep in mind that you have no insurance and you need to keep the cost down as much as possible.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Yea, I wonder that myself LymeXtu. I'm beginning to think that Lyme is the most under-diagnosed and under-treated illness in the US, although it's never possible to tell those things with certainty.
Thanks for the input Dekrator48. I do have decent insurance, a PPO, but I am still worried that they will not cover the treatment. I am certain that have at least Bartonella and Babesia co-infections. Should I expect my insurance to pay or to deny coverage? Thanks.
-------------------- Bart and Babesia seropositive Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset Posts: 168 | From PA | Registered: Feb 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I guess it depends on the insurance co...but keep in mind that insurance co's keep costs down by denying coverage.
I have insurance, but since it does not cover Dr visits or prescriptions it feels like I do not have insurance.
I hope you have better coverage than I do.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Ian, Lyme Disease is a "clinical diagnosis". Test are used to back up the clinical diagnosis. Sometimes ppl test negative before treatment, then a few months later, test positive. Happened to me.
I had no bands positive, but all the symptoms. Got a clinical diagnosis. Started treating and more bands started showing up. One year into treatment got a CDC IGM positive.
Just thought I would throw my experience in there.
Good luck! Hope you feel better soon!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Thanks sutherngrl. Yea, I am positive that I have Lyme know based on having all the symptoms fairly severely. I even have a couple positive bands, which lymetutu so kindly pointed out are the two most common bands with Lyme. I guess I should let this post die because I am sure that I have Lyme. Now I'm just working on getting an LLMD and asking questions about treatment.
-------------------- Bart and Babesia seropositive Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset Posts: 168 | From PA | Registered: Feb 2010
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posted
Ian, my LLMD charged $250 for the first visit and $175 for follow-up visits. I didn't realize he was the cheapest LLMD out there. And he's very good.
I have a basic HMO and it covered 9 weeks of IV antibiotics at 100%. They denied weeks 9-12. My insurance has also covered every oral rx that I've been prescribed, including Mepron. My rx co-pay is $10 for a generic and $60 for a brand name. My LLMD likes to prescribe the newest anitibiotics, such as Levaquin, Tindamax, and Alinia, which do not have generics yet.
I did not opt to pay out-of-pocket for further IV treatment because I don't even have room on my credit cards to charge it. However, lots of people with "success stories" on this board have gotten well with oral meds only.
Kim
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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posted
Thanks so much Kim!! It's good news to hear that my insurance may cover IV antibiotics, as I will probably need them.
-------------------- Bart and Babesia seropositive Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset Posts: 168 | From PA | Registered: Feb 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Most insurance companies will only cover 28 days of IV's. This is pretty standard. But just remember that many people get well on orals only.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
You can probably get well with oral abx. I did and I'd had it for 42 yrs before being dxd.
The most expensive treatment is the mepron for babesia.. but I got well without it. I took clindamycin/quinine and followed it with zith/artemisinin. So it can be done without costing a fortune.
Ins never denied abx treatment for me and I was on them for 4 yrs.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Thanks lymetutu!! As always you are a fountain of information. I got an appointment with an outstanding LLMD near Philadelphia today! She is diagnostic only but works with another fantastic LLMD that treats Lyme. I even spoke with her on the phone, and she understood everything. She understood how all the doctors that I had seen had refused to diagnose me. She understood how one doctor had even said that if my tests were positive that I would still not be diagnosed or treated. I am so happy to have this appointment! Thank you so much for your help!
-------------------- Bart and Babesia seropositive Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset Posts: 168 | From PA | Registered: Feb 2010
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